I got another call today from CHC ( this was the day they were going to arrange a meeting ) The woman who called said she was calling on behalf of the woman who called last week who was not in the office today but did not want me to think she had forgotten . This call was to tell me that the original woman would call me at some future time to arrange a meeting . I asked what the delay was and was told that they needed to collate all the information about my wife . ( pause in disbelief ) Would it be likely before Easter I asked - most unlikely was the reply .I think I am going to shoot myself - anyone got a gun ?

Well I am ok with NRA but not for this...and even if your shoot yourself, does it help anyone in the same predicament.......I think not..... With your savvy words you will get those who can help to happily realize...that they CAN help!

CHC is continuing health care which means the National Health Service makes a financial provision for the care of the patient either at home or in a nursing home . If it is declined then you go to your local authority and they means test you and if you qualify they provide the care package . The criteria for getting CHC are very specific and if they can divert you to the local authority they will as it saves the NHS money .

Oh Georgepa the frustration must be unbearable! I do sympathise. I have said before that the vast majority of the stress involved in our caring role comes from our dealings with the people who are supposed to be helping, not with actually looking after our loved ones. The frustration is the worst of all. Please don't shoot yourself ........ Devon social services though .... now that's another matter!

Oh Georgepa I so empathise,I had an OT and social worker visiting yesterday,they arranged to meet at an office, unfortunately they did not agree on the office so were in 2 different towns,then one left her diary with me.They are sorting out my CHC.The social worker has not much time til retirement so I am sure she will not see the job through,and I will be answering those same painful questions again to someone new.Just one thing we must congratulate ourselves we care 24/7 but still keep appointments and track of our diaries. We are so good, tell yourself!So no gun for you but an achievement award.Px

I am suggesting what Pattz has suggested. Get in touch with your MP if you haven't done so. If you have, what is he doing to help. I've heard a couple of items on the radio over the years where MPs have been involved with PSP claims.

Please don't shoot yourself. Your family, friends and we would be devastated but to the powers that be, you would just be another statistic that they don't have to deal with anymore; and don't you want to know if you finally get it?..I would.

Don't know if you do hugs but I'm sending one anyway. I don't mind if you stand up straight with your arms by your side like Doc Martin.

Thank you for the advice Kevin_1, I too am at the stage (well past it more like) of feeling total disbelief and despair at the whole CHC system, I won`t bore you all with it as I have mentioned it several times before. But 16 months since we first applied and still no resolution .... well, you can imagine.

My next step will be a complaint to the team manager (whoever that is - and how do I find out who they are !) then after that I will approach the MP. I am at my wits` end.

Just telephone reception and ask for the name of the Team Manager and their address. They are obliged to tell you immediately. I think you can expect a telephone call from them within 24 hours unless the team is completely dysfunctional.

I do so sympathise, my husband is still fairly early stages not got to CHC yet, but it has taken letters phone calls etc, to get anything other than seeing the neurologist every six months, I didn't know where to turn! Do these people not know what rapidly progressing means! Perhaps I should apply for CHC now, it might be in place by the time it's needed, my friends were telling me to write to MP so maybe that's good advice, although more stress when you really don't need it

Oh Georgepa I so sympathise with you. I don`t know if they are trained to be so obtuse, but it certainly feels like it. I feel it`s like ploughing through treacle trying to get anywhere with these people - they are meant to be there to help us surely.

I can`t remember if I`ve already posted on here, but after 16 months we were due to have our appeal seen when `they` said they had realised that the original panel couldn`t do the appeal and it had to go to the CCG ! Seriously !! Was there no-one around who realised that sooner ? We have been waiting since a meeting on 8th December to have the appeal considered.

Such a nightmare . I we didn't need it we wouldn't be asking in the first place . At the very first meeting I told them . Make John better and you won't be hearing from me ,

Still no success as yet after two years , but after the last meeting they told me we had 50/50 funding.

Waiting with bated breath .

We. Started with the new care company yesterday , what a difference ... Very early days but a promise of better continuity . At least now if I ring the office , that's if we need to . I will speak to someone who knows us and we'll know them .

We had 147 different carers with the last company . Honestly I am not exaggerating .

So far in two days had seen 5 new ones . I think there may be anther two but that's the limit of regular carers . . John needs two at a time .

They transferred us to this company which is a private one run by an ex district nurse because they also cover CHC . Maybe that's a good omen . Will let you know ..

George please do not give up, you need to get the funding which is V and your right. As Kevin states you need to find the team lead names, then hit them with letters (emails OK but can be lost or not brought into the evidence bundle) complain to NHS Ombudsman, chair of the Trust as well as MP, local paper. The wait is not acceptable, nice for phone call to say you will be waiting for another financial year to start but not acceptable, as who knows what extra pressures will be put in place to their budgets.

You are looking after V at home but (hopefully not) if you have to consider nursing home care for her you must have CHC in place as the costs would cripple you financially if you do not, also you will find it even more difficult to get CHC if in a nursing home.